Wyatt Daring Day a big hit at Waltz Golf Farm

LIMERICK — For most little kids, a rainy day like Tuesday is a literal washout, a day spent indoors.

For Wyatt Daring, Tuesday’s showers were a chance to get a little golf in.

“The funny part is, everybody else is going to think this is terrible weather but, for Wyatt, this is great,” his mother, Teri said.

Wyatt has a genetic disorder called Ichthyosis. He has a very rare form of the disease in which his skin grows much more rapidly than a typical person’s, which causes him to be unable to control his body temperature. Moisture in his skin cannot be retained and for him to safely play outside when the weather is anywhere near 75 degrees or more, he needs a cooling vest.

Recently, someone stole a backpack containing Wyatt’s vest from the family van, prompting his mother to call upon the Waltz family for some help.

Since the Wyatt Day was announced and his story got out, support in the community has been overwhelming.

Donations and offers to help have come in from places as far away as Florida and Japan. Wyatt and his mother were first featured on a local newscast, then on Anderson Cooper’s morning talk show, where a vest manufacturer offered to provide Wyatt with new vests for the rest of his life.

“We now have three cooling vests,” Teri said.

Although rain kept many away from Waltz Golf Farm Tuesday, it was still a celebration of Wyatt, his family, and what they’ve gone through.

In the weeks since his story was told, donations have come rolling in and everyone is ready to help.

A man donated a laptop to the family and one to be raffled off. He told Teri that he has two grown sons with Ichthyosis.

“I just wanted Wyatt to know he can do whatever he wants,” the man said, according to Teri.

Richie Ashburn Jr. turned out to Wyatt Day, bringing along his friend, the Phillie Phanatic, who greeted Wyatt with a high five and his trademark kiss.

Ashburn donated some Phillies memorabilia to be raffled along with the laptop and other items like gift baskets and a giant pumpkin from a nearby farm.

Tiffany Butler, manager of Waltz Golf Farm, said she’s never seen anything like the outreach they’ve experienced for Wyatt and the Darings.

““Not like this. We’ve done fundraisers before, (but) nothing to this extent ever,” she said. “I’ve had people that couldn’t afford to donate volunteer their time.”

Jean Pickford, executive director of the Foundation for Ichthyosis and Related Skin Types (FIRST), said the rareness of Ichthyosis speaks to people.

“I think that Ichtyosis is a rare genetic condition and something people haven’t heard about because it’s so rare,” she said. “People say they want to do something and they want to help (when they hear about it).”

Pickford says her 31-year-old foundation holds a conference each year to bring together parents of children with Ichthyosis so they might get together with like-minded people and effectively talk shop.

“You don’t go down the street and see one of these kids,” she said.

At one such event, Teri met a mother of a child Wyatt’s age in Michigan who also has the disorder. The boy’s mother, at the time, was taking care of him while his father was serving a tour of duty overseas in the military.

In light of that boy’s plight and the good fortune they’ve had leading up to Wyatt Day, Teri and her husband, Steve, are looking to establish a foundation called “Cool Down the Kids,” Essentially, the foundation would be a program through which those that grow out of their vests could pass them along to those that need them and receive another from someone else who grew out of theirs.

“My big thing now is I want to get (other kids with who need them) vests,” Teri said.

Some families have been so desperate without the vests that they’ve had to dip a T-shirt in ice water and put it on their child with Ichthyosis, Teri said.

“We’d never do that,” she said.

“It could give them a heart attack,” Steve added.

As such, CoolDowntheKids.org, when launched, should help provide vests to anyone who needs them across the country.

Teri’s oldest son, Ryan, will run the site, his first “from scratch.”

“I was away for awhile while all of this was happening,” he said. “It’s amazing. I’ve got an amazing mother.”

Wyatt wasn’t the only boy with Ichthyosis at Waltz Golf Farm Tuesday. Tyler Hartmann made the trip up from Maryland with his parents and a classmate, Leiglani Brooks.

Tyler and Wyatt are the same age and, as is the fashion with little kids, shyly exchanged gifts.

“He’s never met another child the exact same age,” with Ichthyosis, Tyler’s mother, Angeline said, tearing up a little.

Angeline heard about Wyatt’s story and decided to make the three-hour trip up. Tyler’s school principal signed off on the trip, labeling it an “educational trip.” As such, Tyler was allowed to take along his “field trip buddy,” the charismatic Leiglani.

Angeline said she called Teri to tell her they were coming up and ended up in a two-hour conversation talking about different ways they handle their children’s conditions.

“It was a three-hour drive, but in the scheme of things in this big world, it’s not that bad,” to meet another child like Tyler, Angeline said.

Angeline felt she had an idea why so many people responded and connected to Wyatt’s story.

“When you talk about stealing, that’s bad,” she said. “When you talk about stealing from a child, that’s worse. But when you steal something a child needs to live, hearts melt.”

At Tuesday’s event, Wyatt was no different than any other kid. A ball of energy, he was more concerned about finding his misplaced green golf ball than sitting down at a picnic table to eat a hot dog his parents got him.

He smiled and marveled at a Cole Hamels figurine the Phanatic gave him and pored over a handmade card that Tyler and Leiglani gave him.

With his new vests and the foundation his family is establishing, Wyatt and others like him will hopefully have many more days like Tuesday, days when they can just be kids.